Friday, November 13, 2009

Monitoring Development in Babies Born Prematurely - My Experience during Developmental Follow-up Appointments

Bringing home a baby who was born prematurely is a big milestone! In a previous post, I described how it felt to bring my daughter home almost 2 ½ months after she was born. It was exciting that she was strong enough to come home, but it was a little scary too. Even though she was finally home, our experience was still different than it would have been if she had been born at term. We were careful about taking her out in public and about having visitors at the house, so that she wouldn’t be exposed to germs and illnesses. In the first month, we visited the pediatrician weekly, then monthly for the next year. Now that she is older, we visit the pediatrician on the typical schedule, once every few months.

In addition to her normal pediatrician, we have appointments with a special medical team who evaluate her development. Because babies who are born early develop differently than most babies, it is important to monitor their progress and identify any issues early. Where families receive their developmental follow-up depends on a number of factors, including but not limited to type of insurance, location, and the infant’s risk level. One way is through an Early Intervention Program (EIP) which is a federal- and state-funded program for infants who are at risk of developmental delay. We had our appointments at a follow-up clinic connected with the hospital where Olivia was born. The hospital should provide information about who will be conducting the follow-up visits before your baby is discharged.

The number of appointments needed varies based on degree of prematurity, health status, and developmental progress. During the appointment, evaluations will be conducted by a number of different specialists. The development team typically consists of developmental pediatricians, nurse practitioners, physical therapists, occupational therapists, clinical psychologists, social workers and ophthalmologists.

We had our first developmental follow-up appointment when Olivia’s chronological age was 10 months and her corrected age was 6 months. Chronological age is the age from the day the baby was born. Corrected or adjusted age is the age of the baby based on the due date. For premature babies, both numbers are important. You need both numbers to get a clearer picture of where your baby should be developmentally. For example, although Olivia was 10 months old, she had just started sitting up, which is something babies usually do around 6 months of age.

I remember being really nervous before our first appointment because I didn’t know what to expect. It turns out I had nothing to worry about and that I actually enjoyed finding out how Olivia was progressing. Here is an overview of what happened during our first appointment.

First we met with a Pediatric Nurse Practitioner, who took Olivia’s measurements (weight, length, and head circumference), evaluated her muscle development and reflexes, and discussed her health history with us. The measurements were taken using very precise methods. Muscle development is examined because premature infants’ muscles develop differently than they would have in utero. For example, the muscles required to have a straight, stretched out body develop early in pregnancy, when there is plenty of room in the womb. As babies get bigger, the amount of space in the womb decreases, forcing them to curl into what is commonly called the fetal position. Babies who are born very early have to develop the muscles needed to curl up after they are born and the difference between developing in the womb and in a crib can affect how they learn to sit, crawl, and walk. It is very common for premature babies to have tight muscles and joints. Olivia’s ankles were especially tight, so we were given exercises to help them loosen up and make it easier for her to walk when she was ready.

Next, we met with a physical therapist, who conducted a developmental evaluation. The physical therapist used the Bayley Scales of Infant Development. The assessment evaluates cognitive development, receptive language, expressive language, fine motor development, and gross motor development. During the assessment, the physical therapist uses different toys to test the baby’s abilities and observes how the baby interacts with both her parents and with the world around her.

The last person we met was the social worker. She asked us questions about our support system (family, friends, etc), our work, and our life at home. The goal of the social worker is to determine how your family is coping with the new child and to address any needs you may have.

After the appointment, the medical specialists developed a report about Olivia’s developmental status. Copies of the report were sent to her pediatrician and to us. Summaries of the team’s observations were provided along with the scores from the developmental evaluation (based on both chronological age and corrected age). The final section of the report described the team’s recommendations and referrals.

So far, Olivia has visited the follow-up clinic twice, at 10 months and 18 months, and she is scheduled to go again at 26 months. Our second appointment was much like the first, just with different tests. Even though I was nervous before our first appointment, now that we’ve been through it, I am grateful for the opportunity to see how Olivia’s development compares to that of children born at term. It has also relieved some of our stress to know that she will get the help she needs if she encounters any difficulties.

Next time: We’ll describe some baby behaviors that can be misleading.

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